I want to talk about a few things.

In part, I started this blog because of the massive amounts of misinformation and fear-mongering in celiac social media groups. I started doing the research and talking about what I found.

The other part started as something of a journal about what it was like to go through the Nexvax2 clinical trial.

I believed Nexvax2 was the cure to my celiac disease. I believed it so much that I spent my own money to participate. I live in Atlanta and the nearest trial site was in Nashville. For six weeks, twice a week, I went to Nashville. After that, about every two weeks I had to go back for additional tests.

I remember that time as being exceptionally difficult, both physically and emotionally. I was tired from all of the travel. My family was exhausted from trying to help support my participation in the trial.

Emotionally, I felt like I was on a roller coaster. Every sniffle or symptom brought up questions about whether I was spending all of this time, money, and effort while only getting the placebo rather than the drug. It was mentally draining.

Then I got sick, took an antibiotic, and two weeks later had a reaction that sent me to the hospital. Because nobody at the time knew if the drug had caused the reaction, I was “removed from the study for my own safety.”

I’m saying this because participation in a clinical trial is hard. It is physically and emotionally draining. The uncertainty of whether you are on the drug or placebo is like dancing on ice. There is also the physical toll if there are gluten challenges, blood draws, and endoscopies to assess whether the drug worked or not. It isn’t easy.

At the same time, progress toward a cure for celiac disease doesn’t happen without volunteers. Volunteers willing to place their bodies on the line to someday help all of us.

Even if the studied drug fails spectacularly, like Nexvax2, there is still good science that comes from it. The sponsors of the Nexvax2 trial are using information gained from the study in an attempt to create a test for celiac disease for people already on a gluten-free diet, without requiring a long-term gluten challenge.

All of this is to say: thank you to the brave souls who participate in clinical trials. Keep up the hard work for all of us, and know that we support your efforts.